Healthbeat: Living with a birth defect

Julie's story

At 19 weeks of her second pregnancy, Julie Mayberry and her husband, Andy, were excited because they were having an ultrasound to learn the sex of their second child. They never imagined the test would reveal anything more dramatic; however, the Mayberry's were told their baby would be born with spina bifida.

The Mayberry's daughter, Katie, was born Dec. 26, 2001. She is now 10 years old and has enjoyed "dancing" with the help of her wheelchair since the age of 3, inspiring other children with disabilities to dance, as well. Katie is a straight "A" student who also plays baseball, soccer, takes music classes, sings in the church choir and goes to a spina bifida camp each summer.

"There is nothing she has wanted to do, that we haven't been able to get her to do with some modifications," Julie said.

"Do I wish she did not have spina bifida and could run and play like other children? Yes. Life is tough for her. Simple things like pulling up her own pants can take a half-hour. She has had 15 surgeries and numerous hospitalizations because of infections," Julie said. "But our family has learned to appreciate the small things in life more. She has been a blessing to our family."

"I encourage other women to take 400 micrograms of folic acid if you are able to get pregnant, even if you are not planning a pregnancy. Studies have shown that it can help prevent spina bifida in many cases," Julie said. "If you've already had a child with a neural tube defect, it is recommended you take 4,000 micrograms of folic acid. That's what I did, and my next two children were not born with spina bifida."

CDC activities

CDC works to identify causes of birth defects, find opportunities to prevent them and improve the health of those living with these conditions.

Tracking birth defects

Accurately tracking birth defects is the first step in preventing them and reducing their effect.

CDC funds 14 states to track major birth defects using population-based methods. State systems use the data from population-based tracking to help direct birth defect prevention activities and refer children affected by birth defects to needed services.

Researching the causes of and risk factors for birth defects

We base our research on what we learn from tracking. By analyzing the data collected, we can identify factors that increase or decrease the risk of birth defects and identify community or environmental concerns that need more study. Currently, CDC is working on one of the largest U.S. studies, the National Birth Defects Prevention Study (NBDPS), to understand the causes of and risk factors for birth defects.

Preventing birth defects

Not all birth defects can be prevented. But, a woman can increase her own chances of having a healthy baby by managing health conditions and adopting healthy behaviors before becoming pregnant. For instance, taking 400 micrograms of folic acid every day before and during pregnancy can help prevent neural tube defects.

Improving the lives of people with birth defects

Babies who have birth defects often need special care and interventions to survive and thrive developmentally. Birth defects tracking systems provide one way to identify and refer children for services they need as early as possible.